Your Child’s Not Okay – Part 2: The Blazing Row

I have a shockingly poor memory. As such, I’ve been searching through old WhatsApp messages to jog my memory about what actually happened when we were told Obi was definitely delayed. I found out we spent A LOT of time writing updates during and after various hospital trips, and it looks like The Disability Disclaimer started earlier than I realised!

Every single message says things like “…yada yada yada <broken brain> <developmental delays> <no idea why> but he’s now smiling regularly” or “but he’s super sweet”, always ending with something like “so we’re enjoying that”. This is classic ‘me’. I’ve never intentionally been optimistic or positive about things, I simply don’t have the attention span to be depressed about stuff for more than a couple of hours, or to wallow in the despair of what might yet be to come.

Unlike Patrick.

Patrick and I approach things very, very differently, and being told that Obi had developmental delays caused the mightiest row of our 13+ years together.

Because we love a good cliché, it happened in the kitchen over the washing up. Like most couples, we bicker (does he really have to sneeze that loud?!), and occasionally –usually after a soupcon of red – that becomes a slightly more heated debate. But we don’t often really go at it (unless he insists that he must sneeze that way and follows it up with five minutes of not-quite-coughing. GAAH!).

But we approached news of Obi’s delays from absolute opposite ends of the ‘our life is ruined’ spectrum. I just wanted to see what progress the next day might bring and take it as it came. But Patrick had decided that Obi would obviously “be a vegetable”, despite evidence to the contrary already presenting itself.

I just could not understand why he insisted on being depressed about something we didn’t know would happen. Why spend from today until eternity waiting for the worst-case scenario, when we could just take today as a win, and think about the most devastating bits only if we ever actually need to?

We screamed at each other for a while, completely unable to empathise in either direction.

I’ve occasionally been accused of being naïve (almost always because I naturally err on the side of trust, when I really must learn to expect less of people!), but it seemed like Patrick thought I was kidding myself intentionally to make things easier. I wasn’t, I just don’t have the patience to join him on a path of long-term despair!

It was only when we stopped shouting, took a breath and gave each other a minute to explain why we felt as we felt, that it clicked.

Patrick likes certainty. He likes fixing mortgages and utilities rates, and he likes knowing what it is that has made something do what it does. A child who pulled headphones apart to see how they worked, he grew into an analytical, logic-driven adult who loves all things science, space and evidence-based. Not knowing what was wrong with our son was more-or-less the worst-case scenario for him already. And so there he lives, in his personal pit of despair where he can’t ever be disappointed, and expectations are only ever exceeded.

But every time something good happens, that is celebrated as a win, and I get that now. I understand it. I can’t empathise with it even the tiniest bit, and I can’t even begin to comprehend how he functions every day down there in the doldrums (although I should clarify that he doesn’t spend every day down or depressed – he’s usually pretty chipper – just “mentally prepared”, as he puts it!), but I do get it. And equally, Pat now gets that riding the rollercoaster (his word…) is the place for me! Not because I enjoy the thrill of emotional incontinence, but because I’d rather be upset with an actual thing, than just in case something might be awful later.

Both Patrick and I are very lucky that we’ve never had any issues with our mental health, and we take as much care as we can of the things we’re able to control, to keep it that way. On my rollercoaster, I have felt lower lows than I’ve had cause to before (what a charmed life I’ve led!), but they are thankfully very few and far between, and because I have no attention span and get easily distracted by shiny things, don’t last more than a few hours. Pretty quickly, I’m back at the top celebrating all the tiny ways Obi is making incredible progress.

However, my approach does come with quirks! A while back, we left a particularly tough neurology appointment and started to talk about what had been hardest to hear. I said it that Obi is unlikely to ever enjoy a proper walk in the park, even if he’s able to take steps (already a major upgrade from ‘prepare yourselves to potentially need a hoist to get him from e.g. bed to bath’), and Pat looked at me confused.

“Oh, I thought it would have been the bit where you started crying! You know, when she said you’d probably never be able to have a conversation with him”. I had completely blanked it out.

I had no recollection of that being said at all – none. I’ve always said that for someone whose career has been founded on communication (can you tell from my posts I like to talk?!), that it would be the cruellest of ironies if my son couldn’t talk. So I just blocked it out.

We laughed about the fact I had fallen off the rollercoaster, and Patrick was characteristically stoic because he was already down there ready to catch me. Because that argument three years earlier laid a vital foundation for us to get through the roughest of days together. Just as long as he doesn’t bloody sneeze at me.

What We Learnt:

1. It’s okay to think, react and behave differently to other people in this with you; just take the time to get to the bottom of it – it will be useful down the road

2. Take someone with you (or take notes) to medical appointments; they can be overwhelming and quite often the questions don’t come until you’ve left the room

3. Consultants spend a lot of time setting expectations, and it can be awful, but I think vital. It’s also brilliant when they get it wrong, and they’ll celebrate that with you!